The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Video by Dr Myhill: Time to stop the abuse of CFS patients

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Aug 17, 2017.

  1. sianrecovery

    sianrecovery Senior Member

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    You are completely entitled to your opinion. I have been her patient for some years, and to me, she seems sane, caring and clinically competent. When I met her, I was largely bed bound. I'm not cured by any means, but I can now drive, work to an extent, and have some kind of life. I don't think that was a natural rebound, I think the avenues I explored with her re the endocrine system and infectious disease really made a difference. She is also the only doctor I have ever seen whose treatment made a change for the better in my health.
     
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  2. sianrecovery

    sianrecovery Senior Member

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    Please do message me with the errors and I can put a correction in the copy beneath the clip that acknowledges them if you have the energy. No worries if not, I will try and find them. We filmed several clips with her in one afternoon, and the MAIMES one was the last one. I think she was flagging by then. I will try and ensure we do any further filming in a more considered way.
     
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  3. Deepwater

    Deepwater Senior Member

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    Same here. The NHS has either ignored me or given me dangerous advice. Dr. Myhill really cares, and has improved my health. I'm not sure what is supposed to be quack about her treatments. Antivirals? support for methylation cycle? Support for mitochondrial function? L-glutathione; D ribose. . . Fine if they're recommended by Lerner, Teitelbaum, Cheney, etc, apparently, so why do these treatments become "quack" in the hands of Dr. Myhill?
    As regards diet, she told me my almost electrically wild skin itches, which jumped from one place to another every couple of seconds, were probably due to a food allergy. I didn't believe it. But a couple of years later I cut out dairy and it just stopped.
    Plus, for anyone needing disability benefits in the UK - the mitochondrial tests she runs are actually accepted by the DWP.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    @sianrecovery I think they are the same errors that Demipivo points out in post #34 on page two of this thread. But in case Dr Myhill was referring to something other than what we are thinking of it would be good to check all round.

    SO:

    a) the cost of PACE
    b) the institution she refers to should be QMUL (queen mary univeristy London)
    c) Wessely was not PI on PACE (I think this differs from my third point but no longer sure) Will post if I go have a look back and find otherwise.
     
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  5. sianrecovery

    sianrecovery Senior Member

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    thanks Snowdrop, will flag corrections in the copy beneath the clip xx
     
  6. sianrecovery

    sianrecovery Senior Member

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    That is an excellent point - much of what Dr. Myhill has suggested or tried over the years is similar to (or inspired by) other doctors in the field. But if it's her talking about it, someone its automatically 'lunatic fringe'. Guess its a car of giving someone a reputation and never letting your perception of them grow beyond that flat characterisation.
     
  7. Wonko

    Wonko Senior Member

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    The other side.
    I believe I was the first to use the term "loon", and I also refered, I think, to "quackery". This was used, as stated but obviously not read, to say that was the impression she was giving, not that I thought she was a loon, or a quack, but that given what, and how, she was saying things, that that is how I think an impartial member of the general public, who didn't know anything about ME or her, would interpret what she was saying. As for what our opponents would make of it, how it could be twisted.......why hand them ammunition on a silver platter?

    I would have thought someone used to using language to earn a living would see the distinction, but obviously not.

    If I caused any offense I apologise, I will now leave this thread.

    edit...and at least in the UK practically every method/treatment/approach used for M.E. by doctors from all over the world, research findings, even most diagnoses for co-existing conditions, are viewed, at best, as fringe medicine by the NHS and most doctors in the UK. If it's not NICE sanctioned it's fringe medicine - or that's how it seems to us lowly non patients (patients get treated, we don't)
     
    Last edited: Aug 28, 2017
  8. Barry53

    Barry53 Senior Member

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    Well said @Molly98 for the whole of your post. I have had the uncomfortable feeling in this thread we have been treating Sarah Myhill very unfairly and rather badly. God knows we need people prepared to speak out, so let's work with them not against them. An effective team is not filled with people where each individual excels at everything, it is the sum of the parts that counts. No wonder some potential advocates shy away if their attempted support is attacked so vehemently; must wonder why they bothered. OK, maybe people's efforts are misguided and worth helping them to improve on, but to flat out decry someone's efforts that are so well intentioned seems like throwing the baby out with the bath water ... and a bit childish / churlish actually.
     
  9. trishrhymes

    trishrhymes Senior Member

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    I think what I and others have mostly been saying on this thread is a response directly to how the video came across to us.

    I don't doubt Dr Myhill's integrity and dedication, and I don't know enough about her treatments to judge their scientific validity or otherwise, but if a doctor is being put up on line as a spokesperson for ME patients, we really need it be done accurately and well, otherwise we are yet again open to attack from the bad guys.

    I am heartened that @sianrecovery has joined in the conversation and taken the criticisms on board.

    I'm still not clear what the organisation or purpose behind this video is. It might help the discussion if this were clarified. For example is it an information video for ME patients to learn more about Dr Myhill and her work, or is it a part of the MAIMES political campaign addressed to politicians and purporting to speak on behalf of all ME patients? Can you clarify, @sianrecovery?
     
  10. Barry53

    Barry53 Senior Member

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    I'm fine with this. I think you also highlight what may have got lost in the weeds, that many of the comments are about how things come across. And that is not a slur on you at all @sianrecovery, I admire the combined aspiration of you and Dr. Myhill. I think there is the potential for something extremely positive that is actually going on here, because although this thread has a lot of criticisms in it, much of it is very constructive, though in my opinion not all of it. If we can focus on the constructive, and not get bogged down anything else, then that would be great. From your comments @sianrecovery you seem very prepared to be helped by the constructive comments here, which I find very encouraging.
     
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  11. Woolie

    Woolie Senior Member

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    I agree with this view. The BPS have been very successful at recasting us as 'anti-science', lumping us in with anti-vaxxers and climate change deniers.

    We're only just getting above that, and only because we're had support from people who clearly don't advocate these things.

    You have to remember that the BPS account of our illness is that we're desperate to create an illness narrative (any illness narrative) out of our emotional distress and avoidant habits. Showing them that we will support any illness narrative plays right into their hands.
     
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  12. Woolie

    Woolie Senior Member

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    Yea. I'm not much keen on having MECFS used to push anyone's agenda, whether its healthy eating, psychological health, or the 'evils of modern living'.
     
    Last edited: Aug 28, 2017
  13. PeeWee

    PeeWee

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    Sarah Myhill probably sees some people who believe they have CFS / ME but actually have burnout. As a doctor she'd want to help them all - her insistence on healthy eating / lifestyle might sort out some of the burnouts without need for further treatment.
     
  14. sianrecovery

    sianrecovery Senior Member

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    It's been a very useful and instructive thread for me, and I thank you for your thoughts. Going to refilm the piece taking on board the feedback. Will post it in here when it's done.
     
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  15. sianrecovery

    sianrecovery Senior Member

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    I am seeing her to film again today, and will clarify that point.
     
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  16. sianrecovery

    sianrecovery Senior Member

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    Thanks very much for your kind help. Refilming! Xxxx
     
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  17. sianrecovery

    sianrecovery Senior Member

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    Thanks Alex - have gathered them from this and am refilming it xx
     
  18. Skycloud

    Skycloud Senior Member

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    I'm appreciative that you and Dr Myhill are willing to refilm, @sianrecovery. I'm looking forward to seeing the result.
     
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  19. Abha

    Abha Abha

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    Hi Deepwater,

    Re the Mitochondrial Tests being accepted by DWP in UK....This hasn't been the case in Northern Ireland which is still part of UK.In the past I got a medical letter from Dr Myhill to support my claim re a disability payment.My first claim had failed so i reappealed the decision and I went to a court to put my case(before my 65th birthday at that time).I used that letter during that second court hearing and it was unsuccessful.I didn't have my PTHP diagnosis/(and wasn't fully aware then of how bad organophosphate contact(malathion in my case )was at that stage and I could only concentrate on B12 issues/Mitochondrial issues/Thyroid issues.
     
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